Nicola has Stage 4 Embryonal Rhabdomyosarcoma, or ERMS. The ERMS has metastasised to her lungs and probably her lymph nodes, but her bones and bone marrow seem to be free of disease so far.
Regardless, she has a very very long and difficult journey ahead of her. The survival rate of a stage 4 ERMS in a normal healthy child is around 40%.
Nicola is not a normal healthy child. She is a child who, because of a bad card in the genetic lottery has a predisposition for cancer. She has been plagued by health problems since her birth and has spent many, many days, weeks, even months in hospital.
We have been faced with losing her so many times, but none have ever seemed quite as real as this.
I find myself swinging wildly in my own emotional response to everything that is going on... going from being certain that everything will be fine and she will breeze through her treatment, to being almost certain that she won't get through this journey and the thought just tears my heart out.
I cannot imagine any part of my life without her in it.
Yesterday was her first really really bad day since all of this started. In the morning her port was blocked and wasn't bleeding back or flushing, which meant that she hadn't been getting her pain relief and couldn't be given her IV medications or her chemo which she was due that morning, so they had to have it reneedled.
Then her dressings on her shunt had to be changed again. Because of the chemo all of her counts, including her neutrophils completely crashed and she spiked a raging fever.
Because of the pressure area over her VP shunt they immediately assumed sepsis and started pumping her full of IV antibiotics.
She was awake from 5am until just shy of midnight before they finally managed to fill her with enough drugs to get her to sleep, even then she was still waking every hour requiring more.
Thankfully today has seen a slight improvement, but she is still far from comfortable or settled. She is rather restless and uncomfortable and struggling with frequent bouts of severe pain. She is still not handling much in the way of food, which could be a side effect of the chemo or it could be that she has picked up a bug in the ward, or it could simply mean that the tumor has swelled from irritation from the chemo and is now applying excessive pressure on her stomach, making it harder to tolerate anything much at all.
The hardest part at the moment is hearing her beautiful little voice calling for "Mama" and seeing the look of pain in her eyes, and not being able to do anything to help her. I can't pick her up, I can't cuddle her, I can't hold her, I can't comfort her, I can't do much more than sit beside her, hold her hand and tell her that I am there.
It's been a bad week in general and in general, it all just plain sucks.